Walking alongside patients who are facing death
6 MINUTE READ
“None of us, in our culture of comfort, know how to prepare ourselves for dying, but that’s what we should do every day. Every single day, we die a thousand deaths.”
(Joni Eareckson Tada)1
As health professionals, we have the privilege of walking alongside our patients through many of life’s greatest joys and challenges. One of the most significant of those challenges is facing the prospect of approaching death.
This can be a difficult topic to address. Conversations with patients about impending death often do not occur until very close to the end-of-life, particularly for non-cancer trajectories such as chronic disease and frailty.2 Yet, early discussions can be beneficial, improving mood and quality of life, allowing patients to prepare for death, and avoiding inappropriately aggressive medical interventions.3 Best practice palliative care recognises that preparation for death may involve not only advance healthcare and legal planning, but also the opportunity for emotional and spiritual preparation.4 As Christians, we may be particularly conscious of the value of this process. So, why might conversations about approaching death not occur and is there a way forward?
These questions have been explored in general practice qualitative research.5,6 General practitioners (GPs) in this research recognised that they may be particularly well-placed to initiate conversations about end-of-life with patients, as GPs provide care across the life course, and often have long-standing relationships with patients within their life and community contexts. This entails a professional responsibility to broach discussions about end-of-life when appropriate.
“GPs … recognised that they may be particularly well-placed to initiate conversations about end-of-life with patients …”
Yet, several factors can result in caution to initiate these discussions.6 These include professional factors such as prognostic uncertainty, inexperience (for junior practitioners) and unclear role delineation where other GPs or specialists were providing care. There may also be concerns about patients’ openness to end-of-life discussions and the potential emotional impact of these conversations upon patients. Conflict within patients’ families could also make initiating end-of-life conversations difficult, as could societal and cultural taboos. Additionally, some GPs identified that personal factors, such as a self-perceived imperative to cure and reluctance to confront our own mortality may make some doctors reluctant to initiate end-of-life discussions.
As Christians, we are perhaps particularly well-equipped to broach the topic of approaching death with patients, as we have an underlying framework to process and find hope in the face of our own mortality. And perhaps doing so is the first step in preparing ourselves to confidently and sensitively broach the topic of end-of-life with those who are approaching this season.
Preparing the ground for the discussion
Additionally, GPs have described their practical approaches to initiating and engaging in end-of-life discussions.5 They “prepare the ground” for the discussion by cultivating a strong and trusting doctor-patient relationship and gauging patients’ readiness to engage in the conversation through their verbal and non-verbal cues. This provides the relational basis to broach this sensitive topic. However, GPs acknowledged that in some cases the discussion did need to occur without a longstanding pre-existing relationship; this was experienced as being more challenging.
To initiate these conversations, it is necessary to find an entry point.5 Sometimes, the patient raises the topic and makes this easy. However, even when patients are aware of approaching end of life and would like to discuss it, they may not always initiate this conversation.7 In these situations, GPs described other ways of broaching these discussions.5 This could include routinely incorporating discussions about end-of-life planning into specific healthcare encounters (such as health assessments). Sometimes, it could involve directly initiating discussions about poor prognosis. However, GPs also described less direct approaches of planting and ‘fertilising the seed’ across multiple consultations until the patient was ready to engage. This might, for example, involve flagging the topic for future discussion or enquiring about patients’ own views on death or religiosity.
“Communicating genuine care in the context of patients’ and doctors’ unique individuality may be more important than employing any one specific approach to communication.”
GPs often involve patients’ families in end-of-life conversations, with the patient’s consent.5 They describe a variety of communication styles when engaging in these conversations. Some took a very direct approach (‘you call a spade a spade’). Several others, however, were more gentle and described ‘tiptoeing’ around the topic, employing active listening and framing the conversation positively. These approaches could also be combined in a ‘gentle but frank’ communication style. The approach to communication used seemed to be informed by and tailored to patient and GPs’ personalities.
On reflection, several underlying principles of this approach to initiating end-of-life discussions align well with Christ’s teaching. Establishing a trusting relationship, within which honest communication can occur about a challenging topic for patients’ benefit, may reflect a practical outworking of ‘speaking the truth in love’ (Eph 4:15). There is also a degree of wisdom involved in considering the timing of these discussions in the context of patients’ readiness. And the variety of communication styles described in some ways reminds me of the diversity of ways that Jesus communicated with those he interacted with. With some he was gentle, with others very direct, each appropriate to their needs. It may well be that communicating genuine care in the context of patients’ and doctors’ unique individuality may be more important than employing any one specific approach to communication.
Initiating end-of-life conversations may never become consistently easy. And despite learning useful principles, we may never develop a simple strategy to broach these discussions that works for everyone. But perhaps that’s the way it’s meant to be. Personally, this challenges me to become more conscious of when it may serve my patients to sensitively broach these issues, and not to avoid doing so. And may we all continue to grow in and intertwine knowledge, wisdom and love as we tread on this ground.
Dr Hayley Thomas Dr Hayley Thomas is a GP working in Brisbane, with a research interest in whole person general practice care.
- Taylor J. An Interview with Joni on Suffering and Healing. 2010. https://www.thegospelcoalition.org/blogs/justin-taylor/an-interview-with-joni-on-suffering-and-healing/. (Accessed 18 March 2021).
- Abarshi E, Echteld M, Donker G, et al. Discussing end-of-life issues in the last months of life: a nationwide study among general practitioners. J Palliat Med. 2011;14(3):323-330. doi: 10.1089/jpm.2010.0312.
- Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673. doi: 10.1001/jama.300.14.1665.
- Palliative Care Australia. National Palliative Care Standards. 5th ed. Canberra: PCA; 2018.
- Deckx L, Thomas HR, Sieben NA, et al. General practitioners’ practical approach to initiating end-of-life conversations: a qualitative study. Fam Pract. 2020;37(3):401-405. doi: 10.1093/fampra/cmz074.
- Thomas HR, Deckx L, Sieben NA, et al. General practitioners’ considerations when deciding whether to initiate end-of-life conversations: a qualitative study. Fam Pract. 2020;37(4):554-560. doi: 10.1093/fampra/cmz088.
- Heffner JE, Barbieri C. End-of-life care preferences of patients enrolled in cardiovascular rehabilitation programs. Chest. 2000;117(5):1474-1481. doi: 10.1378/chest.117.5.1474.